Monday, October 5, 2009

News Flash: Knowing Your Medical History Can Save Your Life--

Yet another proof that everyone should be able to have full and complete access to their real medical histories comes from a story out of New Jersey. Rebecca Raezer was found by her older sister, who was adopted, but the woman knew that she carried the gene for breast cancer, actually a mutation of a gene, BRCA 1, that normally suppresses cancer. But the mutation increases a person's risk of getting breast cancer.

According to the National Cancer Institute, studies have indicated that women who carry these gene mutations have a 60 percent or higher risk of developing breast cancer over the course of their lives. That's right, sixty percent. Now how would you, dear legislator, dear Helene Weinstein (to name one who is adamantly opposed to open records in New York) like to be walking around carrying that gene inside you and not know it?

Yet Ms.Weinstein (of Brooklyn) and other legislators of her persuasion continue to block giving adopted adults their original birth records--the only way adoptees can realistically access their family medical histories. As it stands now, if you're adopted in 42 states, you're out of luck. The state claims that it is "protecting " women from being harassed by their children coming back and saying, Hello, can you tell me what I should be on the lookout for? Breast cancer in the family? Heart disease? Depression? PMDD? Oh, I'm not supposed to know anything because that might embarrass someone?

How anyone can justify keeping original birth records sealed--and preventing the six million adopted people from knowing their medical histories--is quite frankly beyond my comprehension. Given what we know about the importance of a medical history, keeping them from adopted people is a willful act of cruel and inhumane treatment. It is sacrificing the health and well-being of an entire class of people to protect the "privacy" of another--who, in all likelihood knows all the details of their family medical history.

Legislators who oppose open records (because it's going to bust apart their vision of the happy adopted family somewhere in their OWN family) hide behind the skirts of women who gave up their children. Instead of admitting they are looking out for the adoptive parents who support sealed records forever! they say that we first/birth mothers want to be, and thus must be, "protected" from our children. In fact, most of us desperately want to know the children we lost to adoption.

Apparently the legislators have not read the data (which we give them) that now overwhelmingly supports birth mothers in favor of open records. I'm looking at a draft of a study that may come out of the Evan B. Donaldson Institute soon, and the first item notes that "In one study, 82 percent of birth parents said they would be interested in meeting their children." In Tennessee, which has open records, 99 percent of the women were found to have welcomed contact from the children they surrendered for adoption. In other states with corresponding date (Arizona, New Jersey, North Carolina, New Mexico and Washington) 95 percent of the women share this view.

That's why this whole business of keeping the records sealed because of the promised secrecy is so bleepin' phony. If the legislators actually looked at the facts and figures of who wants to know what happened to their children and how they are, and who is going to drive their car into the river if the records are open, and balance some outrageous claim against the good that would come from giving adoptees access to the information of their birth, the records would be open in all 50 states tomorrow.

I'd like to strap Ms.Weinstein and a few other jokers in Albany (any any state capital) who oppose opening the records to a chair and make them watch back-to-back-to back episodes of The Locator where birth mothers are reunited with their children.

As for Ms. Raezer, she discovered a lump in her breast, and her doctor blew it off originally, but because she knew she had the mutated gene, she insisted on getting further testing, and indeed, what was thought to be a harmless cyst turned out to be malignant. She, along with her sister who was adopted, had both breasts removed. And today Ms. Raezer is the contented mother of a one-year-old. Her sister's name was not revealed because her adoptive parents do not know she searched and found her first biological genetic real family. Maybe they are friends of some legislator who votes against open records. But I digress.

How important is knowing your medical history? From the AOL story:

Carrie Zabel, MS, a genetic counselor with the Mayo Clinic in Rochester, Minnesota, says the story of Raezer and her sister is not surprising. Even though Raezer doesn't carry a mutation of one of the BRCA genes, it's possible there are other gene mutations carried in families that scientists haven't discovered yet. "For most families, these gene mutations are inherited," she says. "Therefore, looking at your family history is important." In a case like Raezer's it's especially important. "Being a young age at diagnosis is a red flag to a genetic predisposition," Zabel adds.

"Know your family history, and remember your dad's relatives are important, too," advised Zabel. She recommends that women begin performing monthly self breast exams at age 18 and that they make sure to receive a clinical breast exam from their doctor every year as well. While the standard recommendation for the general population is to start getting annual mammograms at age 40, Zabel says that even if you have a family history or a genetic marker, that doesn't necessarily mean starting mammograms earlier. In fact, a recent study published in the Journal of the National Cancer Institute suggests that the radiation from mammograms can actually put women with damaged DNA at even greater risk for cancer.

So even though knowing your family history might save your life, Weinstein and her ilk still stand at the gate and keep the records sealed. Why? Because they can.

And while legislators are rethinking their dumb and unjust position on sealed records, they ought to go the whole mile and allow the women who surrendered their childre access to the names and addresses of the parents who adopted them. To tell me I agreed to the sealed records is friggen' poppycock. It was sealed records or "We can't help you." And it was not written down in the papers I signed.

But don't get me started on this.--lorraine_______________________
We'd love to hear stories from anyone about what the lack of medical records has meant to them.

11 comments
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My sister-in-law died of breast cancer at the age of 32, leaving behind her then-3yo son. She was adopted. Would knowing her history have helped her? We'll never know. Whenever I have mentioned my lack of access to my medical history I have been blown off with "it's not that important" and "it's your own health history that really matters". If it's not important, why is it recommended for everybody who's NOT adopted? On my children's medical forms I have to write down "mother adopted, history unknown". There's no way I can have myself and them tested for absolutely every single thing that's out there. The state of Illinois seems to think that vague mention of "heart disease" seems to cover it for my medical history, but that's only on my mother's side and I have no way to know my father's. I have no way to obtain continuing, updated medical information. Illinois' medical exchange is a joke. Reading the blogs of donor-created offspring only reinforces to me that everyone deserves the clear facts of their genetic heritage.

I never had the "protection" of anonymity. The adopters of my daughter had my social security number, my name and pictures of me. They even gave one to my daughter at age six to "punish" her. It makes me want to scream!

Our family medical history is filled with cancer, asthma and a thousand other genetic issues and for her to not have it scared me. I ended up force feeding it to her. She truly believed it was no big deal. After all she was seeing the same doctor that she had always seen!

I included that bit about the woman not being able to use her name because her adoptiveparents do not know she found her biological family does say a great deal about adoption today. Still, after all these years and all the education that should be part of the picture. Yet because she did find her sister, she was able to probably save her life.

I have read many of the blogs on this site. Some I can feel the pain and frustration, others just seems filled with guilt and anger.

I am the mother of two adopted children and have had two VERY different experiences. My first son (5 yrs old now)came to our family through a CPS situation, so there was no "relinquishment" issue. However, we have met all of his birthmother's famiy and visited with them in their home about a year after his adoption. We stay in touch through letters and phone calls, but none of them were in a position to take care of him and his birthmother and birthfather were in an out of jail and rehad.

My youngest son (3 yrs old now)is the result of a completely open adoption. I was at his birth and carried him from the OR in to the nursery. We left him in M's room at the hospital for two days for her to spend time with and make absolutely sure she was doing what she wanted to do for him. She has been to our house, even spending the night here.

I dont know what kind of adoption agencies are involved with any of your histories, but the one we went through is strongly in favor of open adoptions. they will only do a closed adoption if the birthmother is insistant on it. We meet each other before the birth and are usually there when the baby is born.

It sounds like their are some poorly educated/managed adoption agencies around.

When I went looking for my son, (lost to adoption in Iowa in 1970) I let the adoption agency know that I had had 2 surgeries for a severe case of scoliosis, and that I'd recent;y been diagnosed with glaucoma. They had no interest in locating my son and sharing this information with him. Neither did the Iowa court system. Unrestricted access for adoptees to their family medical histories is a human rights issue. Closed adoption records deny appropriate medical counsel and treatment to many.

I can only speak from my experience but the Ontario government has admitted on record that adoption corruption was rife about 30 years ago in that province.

There was no such thing as an open adoption back then partly to hide this corruption.

Mothers and fathers were denied basic human rights when their children were wrongly (and often illegally) taken from them. Some were even told that their children had died at birth and then the "dead" baby would be put up for adoption without the parents knowledge.

Parents were denied the right to pass on vital medical information to their children.

Adoptees have had to sue to get vital medical information because these public agencies were not passing on information from the parents. Staff who were not medically trained were making these decisions.

One adoptee who was denied life-saving info successfully sued for millions when 2 government agencies refused to tell her or her adoptive parents about a rare, fatal genetic disorder PKD that she actually had. The agency did not tell the adoptive parents because they did not want the adoptee to be rejected (she had been rejected once before when the first set of adoptive parents were told). Her original mother was prevented from telling her daughter about a kidney transplant that she (the mother) had received because of this disease.

This adoptee almost died as a result. Doctors could not figure out what rare condition she had as it has no obvious outward symptoms. This adoptee had PKD which forms blood cysts on the kidneys that can then burst and cause the patient to bleed to death if left untreated.

The public agency in court actually admitted that they didn't pass the information on until the doctors said she was going to die because then the dead adoptee would not be able to sue them!!

Fortunately, this adoptee is a fighter and she pulled through and kicked their butts in court. Her name is Kariann Ford which you can easily google.She is mentioned in public records (Hansard from the Ontario Legislative Assembly) as well as other places.

As a result of this and a number of other events, the Ontario government has now opened the records and is allowing free passage of medical information without interference.

No doubt this will save lives but it was a long time coming - how many died in the interim?

". . . the Ontario government has now opened the records and is allowing free passage of medical information without interference. "

Unfortunately in most cases, unless the original parents have continued to update their information, their medical info only goes up to the time of the adoption. Since most parents were young at the time of surrender, any medical problems they developed later in life will not be available to the adopted person.

Adoptees simply deserve to have the same rights to their history as their fellow citizens. Access to everything their own information in every regard, not just medical.

The point I was making earlier was that many of the original parents were updating their info for the adoptee but it was not being passed on.

I am one such parent - I sent in updated vital medical information about a genetic heart problem. Apparently it was tossed away into the "circular file" as they quaintly put it - straight into the bin and shredded.

No she didn't - her mother had a kidney transplant for goodness sakes! The social worker didn't even get the right organ (one has to question their intelligence on this).

The original mother and the adoptee even signed up on the Ontario Government registry. Social workers lied to both parties telling each of them that the other didn't want contact which was a lie. They did this so the adoptee would not find out from the original mother about the kidney transplant. If the adoptee had found that out, she would know that the social workers had been lying to her and would sue(which she eventually did anyway).

In Ontario, the interference of social workers in stopping life-saving information from getting through was obscene and on a massive scale. They were stopping consenting parties from meeting each other to cover up the lies of social workers and the government agenices.

I was told personally by one of them that they decided who deserved to live and die as far as adoptees go. She told me that she had a case in which she decided not to pass on information about cancer as "that would upset the adoptee to find out that her mother is dying, so we won't tell her". That was the mentality we were fighting against - people who really thought they were God.

These social workers went out their way to stop updated info getting through even if that meant that the adoptee would die (just like in the Kariann Ford case - they admitted they thought she would die and only released the info when they thought that the doctors couldn't save her).

No one should have that sort of unaccountable power over life and death - no one.

I agree with you that the law in Ontario is not perfect but at least now no one can stop parents like myself from passing on the information like they did before the law was passed.

That is such an important step forward in what can be a backwards place.

A beautiful song from a Korean adoptee

From the New York Times

"Lorraine Dusky, a writer who relinquished a daughter as a young single mother in New York State in 1966, supports opening the records. She reported in her 2015 memoir that in the handful of states that offered women the opportunity to remove their names from original birth certificates, only a small fraction of women — fewer than 1 percent — chose to do so." --Don’t Keep Adopted People in the Dark by Gabrielle Glaser, June 19, 2018

Who Are We?

From the New York Times

"On FirstMotherForum.com, a blog that discusses issues among women who had given children up for adoption, Lorraine Dusky, one of the site’s authors, praised the series (ABC's 10-episode Find My Family): 'Maybe this will be heard by people who think it is unloyal somehow for a person to search out his or her roots, parents, family, when it is a most natural desire of consciousness.'--Two Reality Shows Stir Publicity and Anger"--Dec. 6, 2009.

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"It shouldn't take a miracle to find people you are related to by blood."--Jenn Gentlesk